Friday, August 22, 2008

I took Noah up to PCMC today for his Clinic checkup. He didn't really need to go until October, but since he had been sick AND hasn't even been seen once since his cath in June, I thought it would be wise to have him looked at.

Everything looks great. His heart is perfect. No signs of rejection. No ear infections either (which really surprised me since he won't sleep or eat. He wakes at least 8 times a night and won't soothe himself. Very annoying. And the only thing he will eat right now is a slightly warmed bottle of half whole milk and half chocolate PediaSure... and no, he won't drink Carnations. I tried.) Dr. Norlin says if he doesn't get over it within the next few days, we should go see Dr. Samson-Fang. I'm hoping it's just a stage and he'll get over it. He's been on two antibiotics in the past 25 days. Had Strep and Staph... Oh Oh Oh And I found out he was on the type of antibiotic they use to treat MRSA. So I need to call and find out of that was the type of Staph that he had or not. I really hope not.

Anyways...

He also had a visit with the Allergist, where we found he has no allergies. He had a reaction to everything which meant he had a skin condition. I don't remember what it was called but I wasn't surprised with all his rashes etc. But since the results were not the same as the result to the Histamine then they weren't allergic reactions. He was given a Nebulizer and a daily asthma treatment with Albuterol as rescue. He has had these before as an inhaler with a spacer and we only used it when he was sick. But now we do it daily with the nebulizer and I have seen an improvement.

Then I took him to the Dentist. They said he is a bit behind with his teething but nothing to be too worried about. Even his gum growth (the extra over growth is caused by his immune-suppression med, Neoral) isn't that bad. Surprising, but good. I should have realized it would be okay since he isn't covered in hair anywhere but his head and body hair is a HUGE symptom of the med. They do want me to bring him back every 3 months for a while just to keep an eye on things due to his medical history. But his teeth look good. So unless he ends up getting a lot of cavities we may even get to skip the caps. But either way... Baby Teeth fall out anyways. My sister Jen had caps and they aren't that bad. So again... I'm not worried.

We also had Early Intervention come and evaluate him since Home Health Therapies are getting all messed up with crazy insurance companies where the left hand doesn't know what the right hand is doing (I'll explain later).

He qualifies... BIG surprise there. NOT. lol He is at about a 10 month developmental stage in Gross Motor (FINALLY!! We have worked on this SO hard) and about 8 month developmental stage in Cognitive and speech... meaning he doesn't talk or understand as much as he should. BUT progress is progress and I am NOT worried. Even if he stayed just the way he is forever he would still be my PERFECT miracle boy.

He has his hearing test next week then EI will send out a therapist twice a month. Then if we need to, I'll supplement with Home Health. But I work with him at home a LOT so I don't think it will be necessary. Then in a few weeks we have a follow up with the Allergist and an appointment with the Dermatologist. THIS appointment I am looking forward to. His poor rashes are just out of control and NOTHING I have helps. His skin is so sensitive and dry. It doesn't help that the meds are so rough on him and the fact that he still drags his belly when he does his Terminator impression (think one arm crawl/pull).

One thing that I am watching very closely right now is his ankles. Since his muscles haven't been very strong (thats one reason he can't crawl yet, his hips are too weak) but he is SO determined to stand, he uses the sides of his feet and grips with his toes instead of standing on the bottom of his foot. This has twisted his ankle out of the correct alignment. He still has full range of motion so it's not permanent or even serious right now. But might require braces or at the minimum a shoe implant to help him change the way he stands. Not a big deal.... I just want to keep an eye on it so I can work on it with him. I think having him wear shoes more often (even inside) will help. So I am going to invest in some good tennies. Only problem is he HATES things on his feet. He won't even sleep with socks on. I assume it has something to do with being in the NICU and having IVs in them and then having numerous pricks for blood draws every day. But he will get over it. If it means he has to wear shoes to play, I'm going to bet he learns quickly they aren't so bad.

All in all... Noah is doing GREAT!! Every day he exceeds my expectation with just BEING!! I LOVE his tongue kisses (he's so mature!! lol) even if it means I get his slobber all over my face. There was a time when I didn't know if I would ever have the pleasure. So he can slobber, oh I mean Kiss me any time he wants. The more the merrier.

And let me tell you... Watching him play with Lilly.... or Lilly running to give him kisses good night... there is nothing in this world that brings me more joy. I'm a mommy. And a mommy to the most precious, beautiful, amazing children I have ever had the joy of meeting. I am humbled every day to think the Lord trusted me enough to be their mommy. What could I have done to deserve such a wonderful blessing?

3 comments:

Hi there! Wanna send a hug to Noah and his momma! I was just stopping by to see how he's doing and I'm glad everything's sounding pretty well. We're still waiting. Alan's about to hit the 3 month mark on being listed. And he's almost a big one year old in less than a month.

Just found your blog! I am a 41 year old with a Congenital Heart Defect (Tricuspid Atresia) and it looks like Noah is doing great!

>>He received a heart transplant on 07/07/07<<

Noah rolled all sevens! Do *not* let this child loose in Vegas, he will break the bank! :D

>>And the only thing he will eat right now is a slightly warmed bottle of half whole milk and half chocolate PediaSure...<<

Oh my goodness, he likes mixed drinks already!

Now, to be serious...

>>They told me that my baby was sick.I thought, "Am I to blame"?<<

NO! A heart defect begins so early in a pregnancy. The chances are, by the time that you knew you were pregnant, Noah's heart was already misformed. A couple of misaligned genes have been linked to *possibly* causing a heart defect, but no one is really sure. This is not a result of anything you did or didn't do.

>>I don't think I can handle this.I am really not that strong.<<

I think you are. One thing I've seen over the years is Heart Moms are very tenderhearted, but they have a tough as nails inner core. When they are against the wall, they go to the mat for their kids, and often they win! I think you've got it in you, you may not have found it just yet.

Noah Today

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To the world you may be one person. But to one person you may be the world- Author Unknown

"When you come to the edge of all the light you know and are about to step into the darkness of the unknown, faith is knowing that one of two things will happen. There will be solid ground to stand on or you will be taught to fly."-Author Unknown

The Day I Became A Heart Mother

One day my world came crashing down,I'll never be the same.They told me that my baby was sick.I thought, "Am I to blame"?I don't think I can handle this.I am really not that strong.It seemed my heart was breaking.I have loved him for so long.I will not give up on this child.I will listen to your advice.I will give my son any chance.No matter what the price.I will learn all that I needTo help my baby thrive.I'll even use that feeding tube.My child must survive!Will he need a lot of therapy?Will he gain the needed weight?Please God, help me do this.As I accept our fate.When the monitors beep at night,it serves as my reminder.How many parents would love that sound.Tomorrow I will be kinder.As another Angel earns his wings,I run to my baby's bed.I watch him sleep for quite a while.I bend down and kiss his head.I cry for the parents whose hearts have been broken.I look to You wondering why?Oh Lord, I just can't know your ways....no matter how I try.And yet, I trust you hold his life,and guide us through each day.My mind says savor each moment he's here,but my heart begs, "PLEASE let him stay"!From pacing the surgical waiting room,to sitting by his bed.From wishing for a good nights sleep,to learning every med.From wondering, "Will he be alright?",to watching him reach out his hands.With every smile my heart just melts,despite life's harsh demands.For all who see that faded line.I look to them and smile.You see my child is loved so much.I would face ANY trial.That scar I trace with my finger(It's the door to his beautiful heart).God must have known how much I'd love him(Just as He loved him from the start).A heart mom is always a heart mom.Now wise beyond her years.For those who have angels in heaven,Our hearts share in all of your tears.Every day I will try and remember,I was chosen for him (and no other).I will always embrace that beautiful day.......When I became a "Heart Mother".